A National Mental Health Profile of Parents of Children with Medical Complexity
Abstract
OBJECTIVES The mental health of parents of children with medical complexity (CMC) is poorly understood, yet it drives child and family health outcomes. For parents of CMC, compared with parents of noncomplex children with special health care needs (CSHCN) and children without special health care needs (non-CSHCN), we examined self-reported mental health, knowledge of community sources for help, and emotional support. METHODS Using parent-reported data from the combined 2016–2017 National Survey of Children’s Health, we divided the population into 3 groups: households with CMC, noncomplex CSHCN, and non-CSHCN. We compared these groups regarding the following: (1) parents’ risks for poor or fair mental health and knowledge of where to go for community help and (2) parent-reported sources of emotional support. RESULTS Of 63 955 588 parent-child dyads (weighted from a sample of 65 204), parents of CMC had greater adjusted odds of reporting poor or fair mental health compared with parents of noncomplex CSHCN (adjusted odds ratio [aOR] 2.0; 95% confidence interval [CI] 1.1–3.8) and non-CSHCN (aOR 4.6; 95% CI 2.5–8.6). Parents of CMC had greater odds of not knowing where to find community help compared with parents of noncomplex CSHCN (aOR 2.1; 95% CI 1.4–3.1) and non-CSHCN (aOR 2.9; 95% CI 2.0–4.3). However, parents of CMC were most likely to report receiving emotional support from health care providers and advocacy groups (P < .001). CONCLUSIONS Among all parents, those with CMC were at the highest risk to report suboptimal mental health. They more often reported that they do not know where to find community help, but they did say that they receive emotional support from health care providers and advocacy groups. Future researchers should identify ways to directly support the emotional wellness of parents of CMC.
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As a rule, the mother becomes the primary caregiver while the father maintains or doubles his work activity.
“As a rule, it is the mother who becomes the primary caregiver while the father maintains or doubles his work activity [15,16].”
From “The Key Is to Value Every Little Achievement”: A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care (2023) · cites this paper as [16]
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- Authors
- Bayer, N. D., Wang, H., Yu, J. A., Kuo, D. Z., Halterman, J. S., & Li, Y.
- Affiliations
- University of Rochester Medicine (US)
- University of Pittsburgh (US)
- University at Buffalo, State University of New York (US)
- University of Rochester (US)
- Venue
- PEDIATRICS
- Publisher
- American Academy of Pediatrics (AAP)
- Published
- 2021-08-01
- Volume
- 148
- Issue
- 2
- ISSN
- 0031-4005 (ISSN-L)
- 1098-4275
- OpenAlex
- W3175497014
- Cited by
- 103
- References
- 43
- Citations by year
- 2026: 15 · 2025: 30 · 2024: 24 · 2023: 20 · 2022: 12 · 2021: 2
- FWCI
- 9.88
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- PEDIATRICS (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- parental mental health, children with special health care needs, emotional support, healthcare provider support, advocacy organizations, National Survey of Children's Health
- MeSH terms
- Adolescent, Child, Child, Preschool, Cross-Sectional Studies, Family Health, Female, Humans, Infant, Male, Mental Health, Parents, United States, Self Report
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